[wswells]

Hi, I,m having a hard time with being tired all the time, when I make a bed, I am out of breath. when I walk from my living room to my bedroom I am out of breath, that is also when my heart just goes crazy, beating so hard like it's going to beat right out of my chest. And the blood pressures stay up at around 190/98, and that is on 4 pressure pills. I never feel like I have energy, I try to do things, all sorts of things, but my blood pressure and heart rate just stay way too high. I have to use a walker so I am wondering if I just don't get enough excercise. My PT doesn't let me do too much because of the blood pressure and heart rate. I have had this since 1986 and have been thru it all, Dr. Schwartsman said that I am palliative care only, no more blocks or surgery. I am still in alot of pain so all the procedures (blocks) and surgeries really did not last. I had 3 sympathectomies years ago and they are now growing back bad, like they were before the surgeries (they were done before the Dr.s realized they were useless. I take vitamins to try to keep my strength up get b-12 shots monthly. My PM told me I am beyond other treatments. Does anyone have any thoughts on this, they would really be appreciated. I hate this, it's becoming unbearable along with all the other RSD stuff, sorry to rant, but it has been a rough time lately.
Thank you in advance
Your friend Wendy

[RUReady]

Wendy , Sorry to hear of your issues you are having , I would maybe consider having blood work done to check all your levels . The B-12 was my first thought , however you still may be low on something you are not aware of that your vitamins are not covering . I imagine the inactivity surely plays a role in this as well . Please keep an eye on that B/P , you do not want to keep it running that high .... have they adjusted your B/P meds lately ? Just some thoughts , hope this finds you feeling better and take care !

[wswells]

Originally Posted by RUReady

Wendy , Sorry to hear of your issues you are having , I would maybe consider having blood work done to check all your levels . The B-12 was my first thought , however you still may be low on something you are not aware of that your vitamins are not covering . I imagine the inactivity surely plays a role in this as well . Please keep an eye on that B/P , you do not want to keep it running that high .... have they adjusted your B/P meds lately ? Just some thoughts , hope this finds you feeling better and take care !

RU, thanks for responding so quickly, I just had my blood work done about 2 weeks ago everything was ok except for the b-12 which I have been on for months. My blood pressure stays high almost all the time, the Dr.s think it's either the pain I'm in or the internal RSD (who knows) They mess with my pressure meds every month. I have been hospitalized 3 times to telemetry for the B/P, where they have done every test that they can come up with (all in the last 18 months) If my PT doesn't let me do too much because of what the Dr.s orders are, then I wonder how I can build myself up?
I too live in Fl. I live in Palm Harbor, are you anywhere near here? This weather is a Beach, the heat kills me and then when I go outside to the car, the air conditioning kills me also, do you have that same problem? thanks again for your thoughts.
Wendy

[Jimking]

My wife can't take the heat at all and or cold air blowing out from the AC. She has RSD. One thing positive about her condition is her BP is only slightly elevated and only sometimes. My blood pressure is higher!
Does high BP run in your family?

[Neoplasm]

Originally Posted by wswells

Hi, I,m having a hard time with being tired all the time, when I make a bed, I am out of breath. when I walk from my living room to my bedroom I am out of breath, that is also when my heart just goes crazy, beating so hard like it's going to beat right out of my chest. And the blood pressures stay up at around 190/98, and that is on 4 pressure pills. I never feel like I have energy, I try to do things, all sorts of things, but my blood pressure and heart rate just stay way too high. I have to use a walker so I am wondering if I just don't get enough excercise. My PT doesn't let me do too much because of the blood pressure and heart rate. I have had this since 1986 and have been thru it all, Dr. Schwartsman said that I am palliative care only, no more blocks or surgery. I am still in alot of pain so all the procedures (blocks) and surgeries really did not last. I had 3 sympathectomies years ago and they are now growing back bad, like they were before the surgeries (they were done before the Dr.s realized they were useless. I take vitamins to try to keep my strength up get b-12 shots monthly. My PM told me I am beyond other treatments. Does anyone have any thoughts on this, they would really be appreciated. I hate this, it's becoming unbearable along with all the other RSD stuff, sorry to rant, but it has been a rough time lately.
Thank you in advance
Your friend Wendy

That sounds awful. Sounds like you need to go see a doctor urgently. Maybe A/E?

[wswells]

Originally Posted by Jimking

My wife can't take the heat at all and or cold air blowing out from the AC. She has RSD. One thing positive about her condition is her BP is only slightly elevated and only sometimes. My blood pressure is higher!
Does high BP run in your family?

Hi Jim, Well at least I'm not alone with the heat and the air conditioning. I'm really glad that your wife (is it suzy) doesn't have the B/P problem. I have had RSD since 1986 and thought I had been or seen everything, then about 2 years ago I started to get new problems like theB/P and some other annoying things. I came to these boards about 3-4 months ago and am still learning from the great people here, they seem to always come to the rescue when needed. If I remember isn't your wife getting ready to see the judge this SSDI crap will either be a savior or a killer my thoughts and prayers are with you guys too, I wish the best when the time comes. And Jim, the stress from all the work and fighting you do for your wife is so admiral, she is so lucky to have you have her back, and because of all thuis stress you too need to watch your B/P
Thanks again, Wendy

[dreambeliever128]

The blood pressure problem could be a medical issue in itself. I do think some sort of exercise is something that we all need. I go out to the vets home and exercise with them 2 days a week. I don't do their therabandds or weights though.

I have seen people get out of their wheelchair Wendy. I don't know how old you are but age matters too. I'll be 59 next month but I still stay as active as possible but it took me years to get this far. It wasn't ovenight. My PTer wouldn't make me do certain things either. He mostly did light massage and had me to do some light exercises at home at my own pace. I think only we know how much we can do.

My blood pressure was really high when my pain level was through the roof now it's down. Mine was from the pain. I can actually handle the cold better anymore then the heat. Either one can be a problem though. The heat messes with my CFS. I can't stand the air conditioning though. I use fans a lot but don't turn them on me.

Hope you find some answers soon.

Ada

[Jimking]

Thanks Wendy. The stress not only raised my bp but I have an irregular heartbeat too, however a mild form of both in which I take meds for. I don't fret over it because the contrast between my condition and Suzy's is enormous. Yes, her date in front of a judge is coming very soon but do not have a firm date yet.
I pray you get this bp under control asap!

jim

[wswells]

(

Originally Posted by dreambeliever128

The blood pressure problem could be a medical issue in itself. I do think some sort of exercise is something that we all need. I go out to the vets home and exercise with them 2 days a week. I don't do their therabandds or weights though.

I have seen people get out of their wheelchair Wendy. I don't know how old you are but age matters too. I'll be 59 next month but I still stay as active as possible but it took me years to get this far. It wasn't ovenight. My PTer wouldn't make me do certain things either. He mostly did light massage and had me to do some light exercises at home at my own pace. I think only we know how much we can do.

My blood pressure was really high when my pain level was through the roof now it's down. Mine was from the pain. I can actually handle the cold better anymore then the heat. Either one can be a problem though. The heat messes with my CFS. I can't stand the air conditioning though. I use fans a lot but don't turn them on me.

Hope you find some answers soon.

Ada

Hi Ada,
I appreciate your input always,I am going to be 52 on July 28 I can hardly wait, I think I am a little active as my husband and I are raising our grandaughter since birth. She is just 7 now, but we have had her since she was born. I had to deal with all the motherly things that moms do with infants thru first grade. I was kind of at a place where I had my pain under control, then about 2 years ago different things started to happen. Like I have said before, I have had this crap(excuse my english) since 1986 and thought I had been through it all. What kinds of things do you do with the Vets. I am back to a point with my grandaughter that she is into all sorts of stuff and we ablige. Going to ballet and her recitals, taking art classes and I have to stay with her(because of her age).She takes gymnastics weekly also, and we have to take her and watch her. So I thought that with all of her activities that we are involved with year long I was active, I think she helps me stay younger. Still no one can figure out why my pressure stays so high. even when talking I run out of breath, this is crazy. I have total body RSD involving internal, so what, they still can't figure alot of this out, what are we to do? I guess we just keep chugging along.
Thanks, Wendy hope you are feeling better, you are always upbeat

[Jimking]

Originally Posted by wswells

(
Hi Ada,
I appreciate your input always,I am going to be 52 on July 28 I can hardly wait, I think I am a little active as my husband and I are raising our grandaughter since birth. She is just 7 now, but we have had her since she was born. I had to deal with all the motherly things that moms do with infants thru first grade. I was kind of at a place where I had my pain under control, then about 2 years ago different things started to happen. Like I have said before, I have had this crap(excuse my english) since 1986 and thought I had been through it all. What kinds of things do you do with the Vets. I am back to a point with my grandaughter that she is into all sorts of stuff and we ablige. Going to ballet and her recitals, taking art classes and I have to stay with her(because of her age).She takes gymnastics weekly also, and we have to take her and watch her. So I thought that with all of her activities that we are involved with year long I was active, I think she helps me stay younger. Still no one can figure out why my pressure stays so high. even when talking I run out of breath, this is crazy. I have total body RSD involving internal, so what, they still can't figure alot of this out, what are we to do? I guess we just keep chugging along.
Thanks, Wendy hope you are feeling better, you are always upbeat

Wendy, have you checked your diet such as salt intake and caffein etc.?